November 9, 2012

We Will Rise

Posted in AMT's Faves, If You Need a Good Cry, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , at 8:30 pm by autismmommytherapist

It’s the eighth day after the storm. We remain dark, but still I see the light.

Both of my boys, my beautiful children, have autism. One struggles to make himself understood, and both have an almost religious adherence to routine. Despite their collective need for structure, my offspring have been absolutely amazing during Sandy. My eldest, who is severely affected, has lost it only once. Ironically, it was last Monday at the height of the storm, where he picked up his shoes and dragged me to the door, regarding me with plaintive eyes and emitting cries begging me to leave. That, miraculously, was the most drama we had all week.

I am well aware that not all families in New Jersey with or without differently-abled kids fared so well. When we got out of our internet-barren house last Tuesday, I saw the pictures. I viewed entire towns razed by wind and sea. Eventually I came to that now iconic photo of a roller coaster’s remains, the very one that terrified me for years, and enthralled my eldest son.

I had to stop looking.

Some of the stories from the storm’s havoc have been heartbreaking. Sea Bright, the beach where I spent my youth, destroyed. Mantoloking, where no home was spared at least some structural damage, its bridge bay-submerged, devastated. Some homes on Long Beach Island, where my family once had a summer cottage, swept out to sea while still inhabited as Sandy exercised her wrath.

Residents of towns all up and down the Jersey shore and some throughout the state are displaced from their possessions, their pets, or the skeletal structure of what’s left of their residences. They are the newly homeless, isolated and dispossessed, relying completely upon others for news of their houses or loved ones. Staying at shelters, or if lucky, with friends or relatives, theirs is now a profound disconnect to the world.

The wreckage is unfathomable.

And yet, during this week, when I’ve held my phone up to the kitchen window to access my two minutes on Facebook, I see that offers of assistance, safe lodging, or simply of solace, abound. This social network becomes the place where we receive our news, and it is filled with status updates offering showers, food, or simply a warm living room floor upon which to rest. I witness people searching valiantly for rental homes for complete strangers. I watch as others lend helping hands to those with whom they’ve had contentious relationships in the past, old wounds buried, differences rendered catastrophe- irrelevant. We will match those in need with those who can lend a helping hand. We will come to each others’ aid, politics and viewpoints be damned.

We are Jersey strong. We will re-connect.

There are of course the more personal stories, the tales of the individual lives of family and friends. A neighbor’s mom whose first floor is flooded ceiling high, rendering her home uninhabitable. Another neighbor’s parent evacuated in chest-high water with rope and a prayer through freezing tides, barely purchasing higher ground in time. Rumors fly of looting in Bay Head, JCP&L imposters, stolen generators in our town. A family of six with an autistic child searching for shelter. Thousands of families still blessed with a home, who remain in the dark.

And yet, hope reigns. When I have access to the outside world I read about commitments by ten states to help repair our power stations. On one of our escapes to warmth we witness trucks from Virginia, Texas, and Michigan trekking across Route 195, intent on reconstructing cable and connections for our residents. I devour a New York Times article already discussing the regrowth of Jersey’s playgrounds, such as Jenkinson’s in Point Pleasant Beach, where for six years my sons have delighted in sun, sand, and surf. The Garden State will not be defeated.

We are Jersey strong. We will rebuild.

There is a benefit concert in New York that most of Monmouth, Ocean, and many other counties can’t see, a coming together of talent that raises twenty-three million for our beleaguered shores. Plans abound for fundraisers, school by school, business by business, town by town. My own family is offered no less than a dozen sincere offers to stay, ranging from New Jersey and Pennsylvania to as far as Washington, DC. These offers came despite knowing that uprooting Justin would mean perhaps a week of sleepless nights for all, seven days of watching him truly suffer his own particular brand of disconnect. Families with differently-abled kids remain online sharing resources and dispensing advice, or just as important, simply provide an understanding ear. Clearly, we are hurt. Also clearly, we care.

Our communities, all of our wondrously diverse communities, are resilient. We will recover.

We are Jersey strong. We will rise.

June 18, 2010

Back in the Saddle

Posted in My Take on Autism tagged , , , , , at 8:49 am by autismmommytherapist

I fell off of a horse yesterday. Not a proverbial one, nor am I making an oblique reference to a wagon, for those of you so concerned about my frequent mentions of alcohol. No, I took a tumble from a completely stationary animal embedded firmly into the weathered wood at the Point Pleasant Beach carousel. You might be pondering why a forty-three-year-old woman was indeed engaging her equestrian predilections in the first place, and I respond that I was doing so because my youngest son asked me to race him on said carousel, and I am so grateful he can ask me anything at all that I generally try to accommodate his requests. I am certain he will develop into a lovely child.

The ride itself was wonderful, and of course, I let Zachary win. It was the dismount that did me in, my taking for granted that my flip-flops would afford me the same purchase of the stirrups that my sneakers usually did. When the ride began to slow to its inevitable end, as rides always do, I gracefully swung my leg over the saddle, and artlessly ended up on my ass. After I hiked my beach dress down over my neither-toned-nor-tanned-enough thighs and retrieved my errant ticket book from the concerned dad who’d had it flung at his face, I had time for three successive thoughts. Oh goody, I don’t think I broke a body part, either integral or extraneous; at least Zach was still strapped in on his horse, and most importantly, my fall didn’t interrupt his flirtations with the three-year-old girl next to him; and finally, I don’t give a damn if anyone saw my awkward tumble, but why did that dad have to be so cute?

This is not my first brush with death at our local boardwalk. Last season I faced my own mortality with Justin, walking backwards amongst the crowds trying desperately to eek out twelve more consecutive seconds of adult conversation after a chance encounter with one of my dearest friends. This profoundly idiotic choice resulted in a near concussive event as my skull eventually connected with the boardwalk’s prominently placed railroad crossing sign. After uttering two expletives in rapid succession (that’s a good day for me) my son proceeded to yank my t-shirt down to my waist so he could kiss me multiple times to “make it better”, and since I had one hand clamped on Justin’s wrist I had my own Sophie’s Choice to consider:  cover the boobs, or continue to search for blood and assess my chances for intracranial bleeding. I chose the boobs. I’ve watched enough Grey’s Anatomy to know if it’s a subdural hematoma, I’m doomed anyway. Especially if it’s sweeps.

For the longest time my fear of impending mis-steps resulting from bad choices regarding the care, education, or medical approaches we utilized with our oldest son often left me in a paralyzed state. In the early days after Justin’s diagnosis I was often overwhelmed by the plethora of options the Internet held before me. Should his main therapeutic intervention be Applied Behavioral Analysis, or Floortime?  Should I try the GF/CF diet, or not attempt to wean him off of the three food items he currently ingested without my using the football hold on him?  Do we continue to vaccinate him, or hold off on further injections in fear that in the case of this child, the small but vocal minority is correct that immunizations trigger autism?  Is it okay to secure that babysitter for our irascible toddler even if we’re not certain both parties will still be alive upon our return from Applebee’s?

Back then, and for years to come, choices (and sometimes, the lack thereof) ruled my days. I was so sure that if I picked badly for Justin, selected the wrong school for him, was unable to acquire the perfect autism consultant for our home program, or didn’t adhere to the equivalent of the Behavioral Ten Commandments EVERY SINGLE TIME that I would be damning my child to autistic hell. I put a great deal of pressure on myself to get it all right, to leave no stone, speck, or microscopic organism unturned. I attempted motherhood perfection. I was relentless.

Over time, maybe six months into our family’s permanent autism detour, I began to realize my yearning for perfection in the treatment of this child was affecting my marriage, my health, my ability to sleep for more than three consecutive hours at a time, and my relationship with my child. Eventually I figured out that my hopes of achieving a type of treatment nirvana were self-indulgent, a way for me to feel more control of a situation in which I did not, nor do not, have a great modicum of control. The best I could do for Justin was envelop him in hours of quality therapy, immerse him in consistency, and wrap it all up with a vast quantity of love. The best thing I could do for me was not obsess over every decision or choice I made for him. I came to realize that at every crossroads I should listen to my gut, choose, and move on. It took some time, but I finally understood that to be the best mom for Justin, I had to first tend to my tattered soul, and be gentle with myself and my decisions. This was the most important choice I could make both for him, and for myself.

I continue to struggle with what sometimes appears to me as the overwhelming finality of some of my options, but I’ve discovered at least with the second child I’ve made some progress. Perhaps it’s because he’s found his home on the much milder side of the vast autism spectrum, or perhaps it’s because with the return of his much longed-for language he is fully a participant (and quite a bossy one at that) in many of our decision-making ventures. A number of my friends would take care to point out to me that my calm demeanor reflects in large part his less-that-human status of second child, but I think they’re just suffering from first child envy. It’s true. We do get all the good stuff.

I will continue to work on reducing the angst of my choices with Justin, and anticipate I will be fully evolved with it by the time he’s fifty. Of course I’ll be dead by then, but I’m working on overseeing things from beyond the grave, and I figure I have about forty years to bring that dream to fruition. It’s good to have goals.

And for any parent out there new to autism in its many shapes and forms, please take a deep breath, and remember to let it out. Your child needs you whole, and no matter how involved they are with the disorder, they are still whole, still yours, too. In the days and months to come you will be stretched past any limits you once thought you had. Don’t forget to reign in once in a while, set your own limits as to what you can do, and care for yourself also.

Try, as much as you can, to be well.